Hi All, I've been diagnosed with stage 4 endometriosis in May. I had a MRI done in August which showed bowel involvement but also have they noticed that my spine isn't they way it should be. L4 and L5 showed up as being 'abnormal'. The gynaecologist isn't sure if it's endo related or not. I am seeing a spinal surgeon this Monday. Has anybody ever heard of spinal involvement?? All replies would be appreciated. Many thanks!

I really hope it's not endo. But then on the other hand I don't want it to be anything else which might require surgery. The gynae and bowel surgery sounds scary enough as it is already. Have you heard of women needing a permanent colostomy due to endometriosis? I have been told the chances of me having a temporary colostomy are quite high.

I have read somewhere that in extremely rare cases endo cells have been found in the brain, only found out by investigating the cause of seizures. So I suppose it would be possible to have it on/in the spine too. x

Imagine that... having endo in your brain. Dear me! This is such an awful disease. I knew about endometriosis before I was diagnosed. But I didn't realise it could cause so much pain, distress and that this disease could be so cruel. Let's just hope I don't have spinal endometriosis as my brain isn't too far off then. I have no idea how they diagnose this anyway. Surely they can only be a 100% sure if they take a biopsy??? So many questions...

So so many questions! Endo been found in lungs too as some women reporting coughing up blood during their period, biopsy taken and shown endo cells in their lungs. Cells in parts of the body gone rather wrong somewhere down the line...

I really hope it's not endo. But then on the other hand I don't want it to be anything else which might require surgery. The gynae and bowel surgery sounds scary enough as it is already. Have you heard of women needing a permanent colostomy due to endometriosis? I have been told the chances of me having a temporary colostomy are quite high.

I had bowel surgery and temporary colostomy. It wasn't the nicest time but nowhere near as bad as I expected it to be. Have since had the reversal and although it's a slow recovery for my bowel ( surgeon says 1-2 years of gradual progress) things get better every day.

Thanks for your reply. Did you have the colostomy for 2 years? Having a colostomy must be so hard? I am so scared about having one. I just can't imagine how I will deal with it nor how my partner will deal with it. Can I ask if they had to remove a lot from your bowel?

I've had endo since I was 16 - I'm now 37 - I've had 27 operations for it and no matter what I do It won't go

2 months ago I went to a neurologist who did and MRI and X-rays - he told me my spine was abnormal - like asnake were his exact words - I have cervical bone spurs and sciolosis - not sure if this is something to do with endo

27 Operations? I am so sorry to hear that. You must be so fed up with all of this? As I said, I've only been recently diagnosed and the more I read up on endometriosis the more I realise what an awful disease this is!! I hope they find what's wrong with your spine.

At the moment I struggle every day with the pain, especially with the pain in my back and I have asked my doctor if there could be Endo there and he said no, I wish they would do more surgery on me but because they think I have adhesions they will not until they know for sure.

If I can give you any advice or you just want to talk do not hesitate to contact me.

I really get the feeling that a lot of GPs dont' know what endometriosis is all about. Also, it seems that even gynaecologists have their own way of treating their patients. I've been wondering if I should go for a second opinion and if I would be told the same thing? I really can't deal with the pain like this anymore. It is excruciating and work has become more and more difficult. Are you still able to keep up with your job?

I work 5 days a week 08:45 to 17:30 I have just passed my driving test so it is easier for me to get to work, at the moment work is very difficult because I can not really take time off as easier as I would like so I am struggling I want to go to more doctors appointments but it is difficult.

I work 5 days a week as well, 9 - 5. I just find that I am not able to concentrate as well as I used to and I am stuck in front of a computer most of the time and sitting in the same position is just awful. Gone 11am I want to go home and sleep.

I share an office with others which doesn't make it any easier. I feel like I need to be hiding I am in pain...

How do your manage being at work when you are in an awful lot of pain?

Sorry for all the questions but I just quite nice to be able to talk to others who are suffering due to this disease as well. I've been a member for a number of months but this is the first time I actually speak that openly about it all.

I know how you feel. People can't see that physically there is something wrong with you and nor can they see the pain we are in and how daunting, depressing and awful this disease is.

I am office based as well. I am head of education for a hospice and I am spending a lot of time in front of the laptop. Or I am either teaching a group of people... I don't know what to do really. The pain has just been so bad for the last 2 weeks that I feel I am not doing my job properly and to be honest this causes additional stress... Oh boy... what a mess.... I hope your day is going well and I hope the pain isn't too bad for you today. x

I am on Paracetamol, Diclofenac, Codeine Phosphate and Tramadol. I take the maximum dose of all of them daily. I am seeing my GP tomorrow as the drugs aren't covering the pain any longer... Maybe I should discontinue all of them and see what happens?

The gynaecologist I saw said the same thing. He said that at this stage laser therapy would not make much difference and that the endo would grow back in no time. He said the only option is to cut it all out.

When I was first told about the bowel involvement he mentioned that there might be an option to shave the bowel rather than removing part of the bowel but I was told at my last consultation that that's no longer an option.

And now the possibility of having it in my spine as well. Please let me know if you can find anything useful on spinal endo.

Fingers crossed for my consultation with the spinal surgeon this evening at 7!

Hi All, just a quick email for those of you interested. I saw the spinal surgeon yesterday. He said he had never heard of spinal endometriosis before. He did say I have a hernia (L4 - L5) which isn't endo related. He did say however that the pain I am experiencing is abnormally severe for a hernia of this kind. He did say that my long muscles attached to the spine are inflamed but he wasn't quite sure whether that was related to the hernia or if that could be endo related or who knows anything else??

I am having to go back to hospital this afternoon for an epidural injection in my spine to administer cortisol to help with the pain. If the pain get's better (including the muscle pain) all will probably be related to the hernia. If the pain doesn't get better then the mistery remains unsolved I suppose??

Hi there hope your doing as well as can be. I had a major op in 2008 as I had endometriosis on both ovarys my right ovary was stuck to high up on my pelvic wall and my wall was stuck to my bowel and I had it on my uterus and bladder. I also had it in my anus. I've not heard of it on your spine but I did have it on the ligaments in my back and I think this has returned as ive get awful back pain. I've got an appointment to see my gynaecologist on 5 November it seems such a long time away. I think I've got it in my bowel too as the pain is immense I'm on IBS medication also but sometimes they just don't work. Im also on many other tablets because of all the pain I'm still getting. Good luck xx

Hi. I've heard of endometriosis affecting your sciatic nerve and also the spine. I've suffered sciatica for a few years now, on and off. I'm only just relating it to when I have endo pain - I hadn't spotted the link before. I hope you get sorted soon.

Hello I just came upon your question, I have been dealing with the same exact thing. I just had surgery for the stage 4 endo, but the L5 and L6 is so bad I had to quit my job I can't even wake straight. I'm not getting anywhere with my doctors, I was wondering how you are doing and if you did anything or found out the reason. It would help me so much, thank you and hope your feeling good.